We Need to Talk About ADHD Stigma in BIPOC Communities
Battling stigma is nothing new in the ADHD community. In Black and other marginalized communities, it abounds — outside and, even worse, inside Black families. But reducing stigma in BIPOC communities is not all on us. We need more practitioners who look, talk, and act like the patients and clients they see.
Twenty years ago, I was a single mother who had two sons with ADHD. I wanted to start a support group for families like mine in Chicago. When I contacted the leader of a nearby suburban support group to ask how to go about it, she suggested I shouldn’t bother. She felt I should join her group instead. The reason? Urban children didn’t have ADHD. They had “behavior problems.” Yes, that was code. Black children didn’t have ADHD. They were just bad.
Other Black parents have scolded my parenting. They wouldn’t medicate their children! Medication secretly causes genocide. Besides, their kids don’t have ADHD. Schools target them because they are Black. My own mother told me the cure for ADHD was to “discipline” my child more. A social worker accused me of “enabling” my son when I asked for accommodations.
Stigma, stereotypes, and biases affected our family’s ability to manage attention deficit hyperactivity disorder (ADHD or ADD). And we are not alone. These incidents happened more than 20 years ago. They still happen today. Battling stigma is nothing new in the ADHD community. The lack of understanding is surprising, even among professionals. But in Black and other marginalized communities, it abounds. African American leaders and advocates in the ADHD community are well aware of the stigma.
We must deal with ignorance inside and outside our families and communities. ADHD author and advocate René Brooks is the creator of the Black Girl, Lost Keys blog. She contends that “our children are punished for doing stuff that is neurodivergent. People misinterpret ADHD behaviors. We must convince families there is more than one way to parent. Reality dictates that we must teach our kids to navigate the tricky waters of being Black and having ADHD. How do we do that without harsh consequences for them?”
The stigma affects parenting within the Black community, but Black parenting is often criticized by outsiders, as well. Helping people shift their parenting styles, “without white people’s finger wagging,” is another challenge, according to Brooks.
IngerShaye Colzie, MSW, LCSW, is an ADHD coach and therapist near Philadelphia. She notes humiliation from family and friends can be especially hurtful. “If you don’t have a strong friend group, your community will ostracize you because of how you parent and others’ expectations for your child. Being misunderstood takes you out of your friend group. And then you are alone.” Both she and Brooks connect stigma to the loneliness and isolation felt by those with ADHD. ADHD’s “quirks” set people apart from their familial and cultural communities. But cultural stigma in the ADHD community isolates Black, Indigenous, and People of Color (BIPOC), as well.
ADHD Treatment Stigma and Fears
Kofi Obeng is co-facilitator of an online ADHD support group for African Americans. He believes the roots of the stigma lie in a system of white supremacy. This system undervalues Black humanity and penalizes Blackness whenever and wherever it can. “The stigma manifests itself in victim shaming/blaming by those in the ADHDer’s circles,” says Obeng. Obeng, from South Carolina, says ADHD is almost never recognized as the cause of problematic behavior. Instead, friends and family blame character flaws that a child could fix if he would try harder.
“In other words, they are saying the problem lies within you. Only you can fix yourself, so don’t expect any empathy or support from the rest of us. My own family blamed my struggles with ADHD on my lack of persistence. They said I get bored too easily. Or I’m not a finisher. It was my own fault. I should just pray more.”
The stigma spurs resistance to ADHD diagnoses and treatment. Parents believe an ADHD diagnosis implies their child has an intellectual disability. They also fear an ADHD diagnosis will relegate their child to special education. Black and Latinx children are assigned disproportionately to these programs, often with poor outcomes.
“Black parents may be afraid of having their children diagnosed. They fear poor treatment and punishments that could put them into the school-to-prison pipeline,” says Romanza McAllister, LCSW. McAllister, a trauma-informed psychotherapist and ADHD coach based in Brooklyn, New York, is an adult with ADHD.
Historical and institutional medical maltreatment also informs decisions about treatment. These fears are not without justification, but they bring devastating results. They often lead to parents refusing medication in an ADHD treatment plan.
Angela Mahome, M.D., a board-certified child and adult psychiatrist in Chicago, says that parents in her Black patient families often get defensive and angry when she suggests ADHD medication. Mentioning her own ADHD and medication use can help. “I work very hard to avoid bringing myself into sessions. But sometimes it helps if I tell the parents I also have ADHD and take medication for it. It makes me more relatable, and gives parents hope for their child’s future.”
These fears are not limited to children. “Folks in the Black community equate ADHD with laziness and defiance in children,” says McAllister. The fear also affects adults. Research shows that, compared with whites, African Americans are less likely to receive consistent care, and they are rarely included in research. They are more likely to depend on emergency rooms or primary care than mental health specialists. “It’s risky to disclose your diagnosis. We have often seen our needs dismissed and unmet.”
Undiagnosed ADHD in BIPOC Communities
People of color are often criticized or shamed for their differences from their white counterparts. They don’t have the same beliefs. They don’t operate in the same way. Nor do they come to the same conclusions. So a Black parent who resists medicating her child or accepting a diagnosis is thought to be less informed or uneducated. They must not understand what is best for their child. These stereotypes arise, in part, from practitioners’ stereotypes and lack of cultural competence.
“When people of color do decide to disclose or seek professional help, their claims are often met with skepticism,” says McAllister. “Many people have encountered practitioners who aren’t open to learning about the traditions and beliefs of other cultures. Nor are they committed to examining their own biases and prejudices.”
All of this leaves children and adults of color undiagnosed, misdiagnosed, and untreated. And that brings negative outcomes. McAllister notes, “Living a life with undiagnosed ADHD while combating racism and discrimination leaves one at risk for a host of comorbid mental and physical health conditions. Going undiagnosed or misdiagnosed can lead to swifter and more frequent contact with the justice system and institutionalization.” Undiagnosed and untreated children and adults are more likely to encounter problems at home, school, and work. They are much more susceptible to bullying, on the playground and on the job.
Obeng agrees. “Some individuals with ADHD develop inferiority complexes and live in isolation. These conditions are breeding grounds for depression, addiction, and self-harm. Their negative effects compound throughout one’s life (bringing health problems, relationship problems, financial problems, work problems),” says Obeng. “The school-to-prison pipeline snatches up Black youth. Many Black families can’t generate wealth. They struggle to survive, much less thrive.”
Normalizing ADHD in BIPOC Communities
A group of African American leaders and advocates in the ADHD community recently identified its stigma as the main issue for people of color with ADHD. They sought ways to overcome this challenge. Chief among them was talking about ADHD in our communities. McAllister noted, “Having diagnosed adults speak at career day, emphasizing how receiving treatment improved their lives” would help children and teens accept the diagnosis. Dr. Mahome also believes it would be reassuring for parents. It “normalizes ADHD when people admit they have it. It’s helpful when parents see successful people who have ADHD.” That’s why she may reveal her own ADHD and that of her child, a student at the University of Chicago, when working with reluctant African American parents.
René Brooks has helped normalize ADHD in the Black community, particularly with women. Brooks is a social media influencer with her blog and website. As more people share their experiences, we will reduce the humiliation and stereotypes associated with ADHD in all communities.
It is important to create community. We need spaces to share our challenges and to celebrate our successes, and we need spaces to support one another. And people of color are creating community spaces. ADDA has an African American/Black Diaspora + ADHD virtual peer support group, co-led by McAllister and Obeng. Colzie, Brooks, and others have created informal spaces (Facebook channels, blogs) for Black women with ADHD to support each other.
Distributing information at conferences will help. Books and articles like this one help, too. McAllister believes that “clear ADHD workplace accommodations and more integrated school/workplace training on implicit bias, anti-racism, and ableism” will help. So will individual efforts. We must be brave enough to talk about ADHD with friends, family, and co-workers.
Obeng believes the solutions lie in individuals and communities as a whole. “On a personal level, it’s about self-care and connecting with communities like ADDA. There you can form friendships and get resources. Once you are connected to the right community, possibilities open up — support groups, coaches, conferences.”
Reducing stigma in BIPOC communities is not all on us. We need more practitioners who look, talk, and act like the patients and clients they see. Established organizations perpetuate stereotypes and maintain stigma. They must recognize the role they play, and they must be ready to correct it.
Eliminating ADHD stigma in communities of color will not be quick or easy. But individuals, groups, and organizations are willing to tackle the challenges. We have a long road ahead. We’ll know success when ADHD stigma doesn’t deter any child or adult from the diagnosis and treatment they need.
Tips for Talking to Minority Children with ADHD
1. Use clinical language that reinforces ADHD as a medical condition.
- “I have diagnosed you with ADHD.”
- “Your symptoms are consistent with a diagnosis of ADHD.”
2. Avoid language that can be upsetting or perceived as negative:
- “You suffer from ADHD.”
1. Don’t talk about medication in terms of punishment or reward.
- “If you are good today, I will not make you take your medication tomorrow.” This means that skipping medication is a reward.
- “Since you were bad and embarrassed me in the store, I am going to make you take that medication tomorrow.” This makes the the medication a punishment, not a treatment.
2. Be clear about why you are or are not giving the medication on non-school days.
- “I am not going to give you medication today, so that you can eat a little more.”
- “I want you to take the medication today, so that you can focus and be on your best behavior.”
3. Do not shame or allow others to shame a child for seeing a therapist or taking medication.
- “You have to take the medication because you cannot make good grades.”
- “It’s your fault that we have to be here to see the doctor.”
1. When addressing concerns with parents, keep the focus on the student being discussed.
- Don’t put the focus on how a child’s behavior is disruptive to other students and/or makes teaching more difficult. The implication is “Your child’s being here is a problem.”
2. Acknowledge a student’s improvement.
- It encourages students/parents to continue treatment.
- It builds self-esteem and helps the student develop a more positive identity.
— Angela Mahome, M.D.
Tips for Clinicians Working with Black Families with ADHD
Prompt and allow the parent to ask questions. Patients and their families may be afraid to show that they do not understand the diagnosis. Or they are not sure what to ask.
Always make sure to know what families need and their expectations. Some families don’t want treatment, they just want to know what is going on. Offer treatment options, but allow time for deliberation. They may need a follow-up appointment.
It is important to incorporate families into the discussion. Many families will consider the treatment option to be a family decision. Don’t rely on the parent and child in the room to relay information to others. In medical school, we are taught that the patient and doctor are the ones to make all treatment decisions, but many cultures believe that “it takes a village to raise a child.” Include the village if that is the wish of the family and the child.
If you do not understand something you need to know about the patient, ask questions. It is not a weakness to not know. Your questions show your interest.
Many Blacks parents fear the medical system and may have waited to come in for help. Don’t mistake such a situation for disinterest.
It is important to recognize matriarchal structures. The grandmother or another elder in the family may be making the decisions about whether to pursue treatment. Ask the decision-makers to be in the room to inform the decision-making.
Differences in language and communication can be barriers to care. Listen to the family and their communication styles.
Acknowledge your own biases with Black patients. They are there and are shown in studies. Understand them and correct them. Not doing so brings outcomes detrimental to the patient.
— Napoleon B. Higgins, JR, M.D.
ADHD Stigma in BIPOC Communities: Next Steps
- Read: The Children Left Behind
- Understand: ADHD Clinicians Must Consider Racial Bias in Evaluation and Treatment of Black Children
- Learn: Having “The Talk” with Black Children Impacted by ADHD and Race
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